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A new national MS and Parkinson’s disease registry promises better understanding of those neurological diseases.

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December 18, 2018

There’s strength in numbers.

That’s at least part of the reason why advocates for those with multiple sclerosis (MS) are excited by the recent announcement by the U.S. Centers for Disease Control and Prevention (CDC) regarding the creation of a registry for those with neurological conditions, including MS and Parkinson’s disease. The National MS Society (NMSS), among others, have been pushing lawmakers and federal officials to allocate funding for this type of program for more than a decade.

“Having a better understanding of the exact prevalence of MS can help us get a better understanding of the possible causes of the disorder as well as how it manifests,” notes Nicholas LaRocca, PhD, the vice president for healthcare delivery and policy research at NMSS. “It also provides us with a bigger cudgel, if you will, to raise awareness of MS and lobby on behalf of those with the disorder so they can get the attention and resources they deserve.”

Called the National Neurological Conditions Surveillance System (NNCSS), the new registry of reported cases of MS and Parkinson’s disease will enable the CDC to identify research needs and foster collaborations among physicians, researchers, agencies, and institutions to improve access to care and, ideally, speed the development of new treatment approaches.

Created as part of the 21st Century Cures Act, passed by Congress in 2016, the NNCSS will have a $5 million budget in fiscal year 2019, and MS and Parkinson’s disease will be used “to determine how we can have the biggest impact by exploring innovative methods and complex data sources, and capturing lessons learned, to determine which approaches will help efficiently extend the NNCSS to other neurological conditions,” the CDC said.

“CDC looks forward to helping to develop greater understanding of neurological disorders and conditions to improve health and economic consequences for those who are affected,” the agency added.

MS Suspected to Be More Prevalent Than Previously Thought

As with other surveillance systems for various diseases established by the CDC, the NNCSS will use information on cases of MS and Parkinson’s disease — but not the personal data of those with the conditions — to monitor disease trends, potentially identify populations or geographic areas at high risk, budget resources appropriately, and draft public health policies.

Indeed, having this information can have a profound effect on those dealing with these debilitating diseases. In an effort to fill the gap in knowledge on the prevalence of MS, for example, the NMSS launched its “prevalence initiative” in 2014 to identify just how many Americans were living with the condition. The effort cost more than $1 million, and it found that nearly 1 million people in the United States are living with MS — more than twice the number previously estimated. However, this is a preliminary number, as the study is under peer review.

“Based on emerging data, MS is suspected to be more prevalent than previously thought, with increasing incidence,” notes Jeffrey A. Cohen, MD, a professor at Case Western Reserve University School of Medicine and the director of the Mellen Center for Multiple Sclerosis at the Cleveland Clinic in Ohio. “This program will help address that issue.”

An Opportunity to Find Environmental Triggers and Geographic Hot Spots

The NNCSS will be similar to the registry for amyotrophic lateral sclerosis (ALS) established by the CDC in 2015. Dr. LaRocca says it was borne out of an interest in exploring potential environmental triggers — such as exposure to toxins — for MS and other neurological disorders. Recent research, for example, has identified possible links between household chemical exposure and MS risk.

“If you don’t know what the number of people with MS is, then you don’t know if the prevalence is higher than it should be in certain areas,” LaRocca explains. “That really hampers us in terms of our understanding of the disorder. The CDC registry will create a mechanism for tracking neurological disorders as well as identifying environmental triggers. It will also tell us what’s happening with the population of people with MS: Is it getting older? Or, is it growing? Having that information will allow us to improve healthcare for people with MS.”